Hi! I'm new here, and I'm just looking for some advice.
I've had pain and weakness in my muscles, and joint pain that's gotten progressively worse the past 2 years. It's now gotten to the point where my hands cramp when I try to even brush my teeth.. and lifting my hands above my head and climbing stairs is extremely difficult. I have muscle cramps and joint pain in my legs, hands and feet, and lower back, and it makes getting out of bed at all difficult at times. I also have very frequent headaches. I'm 23 years old, I've been fairly healthy other than having factor v blood clotting disorder and high blood pressure during my pregnancies. I also have a ton of pain in the soles of my feet, which makes it hard to bear any weight at times. I have morning stiffness, and the pain seems to stay regardless of what i do. excercise doesnt help, resting only helps slightly.. the only thing that helps much is an extremely hot bath. The pain stays all of the time, but it gets worse at times, and when this happens I usually get a 'pins and needles' feeling. my joint pain gets worse with cold weather. ive also noticed some memory problems lately, I tend to forget things right after they happen. I saw a rhuemy a few times until he wrote me off like nothing was wrong.. I got diagnosed as having fibromyalgia.. which i i'm not sure i believe in. it seems like an easy and lazy diagnosis. I havent seen a dr for it in a year and a half after dealing with that jerk. Im in the process of getting referred to a new one. I had a couple of tests done with him though.
Ana was positive with a titer of 1:160, speckled pattern.
Positive RF factor
negative lupus panel
had a vitamin d deficiency at the time, but ive been taking supplements since then.
I've also tried potassium supplements, thinking it might help the muscle cramps, but it has not.

my old dr had told me that it was not Sjogren's, and that it wasnt my thyroid. he thought i might be 'developing' an auto-immune disorder, but that it wasn't showing enough symptoms to diagnose yet. it's gotten much worse since then.

also, my mother has RA, even though i was told that it doesn't increase my chances of having it, much.

Let me tell you that fibromyalgia is not easy nor is it a lazy diagnosis. When I first began to have symptoms no one had even thought about fibro as being a legitimate disorder. It was "all in your head". I was a very active 20-year-old. I had a child, a job, I water-skied, very athletic and bam! Fibromyalgia. I have had this thing for thirty years. I think the trauma of giving birth triggered it. I am learning more and more and I have more and more pain and other symptoms. It is definitely not a lazy disease. Most people have to continue working with chronic pain and burning skin and....Sincerely, searchin

I wasn't saying that people with fibromyalgia have the pain "all in their heads".. I was simply saying that it seems to me that maybe there is an underlying condition that is causing this pain. That's all. If fibromyalgia is all i have then i definitely understand the pain.. But I think there is something else going on, since I've had so many other symptoms and a positive ana and rf factor. I don't know enough about fibromyalgia to say whether it's 'real' or not, but I won't settle for just that diagnosis without any further testing... Once the doctor did the trigger points test on me, he said that was what i had, ignored all other test results.. and my last appointment was supposed to be an appointment where I got tender point injections, and once I went in, he simply said he wasn't doing it, and literally left his office. I don't know what his deal was, but i'm so frustrated by all of this.. and cleaning my house and taking care of my two toddlers has become so freakin difficult to do.. showering is even difficult.. I have deep aches in my bones and muscles.. does that sound like fibro? I'm so lost in all of this, and I'm jumping through the hoops that my health insirance wants me to, just to get a new rhuemy. It will probably be a few weeks until I can see one, considering they seem to be so booked all of the time. I wasn't trying to offend anyone.. I was just saying it was a lazy diagnosis on the part of MY OWN doctor. Thanks.

The following user gives a hug of support to mandi_hart330:Searchin (11-03-2010)

You did not offend me. I once had a pain doctor that did the same thing yours did. I mean he was supposed to manage my pain! As far as I can see you should have been at least informed about what the results of your tests mean for you. I mean after all you are the one who has to pay for the visit. I hope you get into a good rheumatologist and get some of your questions answered. Do your hands swell in the am and then the swelling goes away after a few hours? Let me know...Sincerely, searchin

Hi Mandi. I have both primary OA and primary RA with secondary Sjogrens and possibly secondary gout......know a little about these disorders.

Having a mildly positive ANA means little to nothing. The ANA can go positive and negative and back and forth and you can be fine. As for the rheumatoid factor, it's not much different. About 5% of the general population has a positive RF and no disease. They have to be very positive to help a diagnosis. Besides, most auto-immune disorders actually have a "profile" a set of symptoms that develop over time that makes the diagnosis. For RA, there are 7 criteria and you have to have 4 of them....and the positive RF is only 1 of the 7.

But widespread pain like that needs to be examined. You can't get enough potassium over the counter to make any difference in muscle problems...that has to be a script. If I recall, the highest amount you can get of potassium is 99mgs. The daily recommended amount is 3500mgs/day. You'd have to take 35 pills a day just to get that. But a simple blood test will tell if you need potassium. Has your doc done one and if not, why not?

Fibro is a diagnosis of exclusion. Since it has no blood tests or anything else they can see, they should rule everything else out first. What I have read is that more and more fibro is being seen as a pain disorder similar to reflex sympathetic dystrophy....one of the most painful disorders on earth. And some docs don't think that exists either because there are no tests to confirm it(we can't see atoms either but we know they exist...grow up docs).

Here's an idea. Go see a podiatrist for the constant foot pain. It sounds like it might be plantar fascitis. That can be treated. Then ask the podiatrist's help in finding someone to treat your pain who takes it seriously. I've heard a lot of good things about podiatrists helping folks find out the source of their pain. They feel under appreciated and love it when someone comes to them for help. And they are more likely to take it seriously. They can even do the potassium levels and other tests. And they know who to see.

Hi Jenny, and thank you for your input. I'll be going to see a new rheumatologist soon, and I'll get a second opinion about the fibro.. If this is fibro, i'm just blown away by how much it can affect someone's life.. My old doctor acted like it was pretty much nothing, and wouldn't give me any kind of treatment for it. he just acted like I was trynig to get painkillers, like I was some kind of druggy. I've heard many others have had that problem as well though. Maybe I can at least get a doctor that understands this pain and who will help me with understanding the condition and treating the symptoms. That's not so much to ask. My mother having RA just scares me into wanting to make sure it's nothing else. I wasn't aware that positive rf factor can happen without a disease present. I haven't had my potassium checked, because I haven't seen a doctor about this in a year and a half, until recently. I had the ana done, thyroid tested, was tested for diabetes, and my rf factor. Do you know if having factor v blood clotting disorder can affect your lupus anticoagulant? I will go see a podiatrist about the foot pain, thanks for the recommendation on that. I'm going to research everything I can on fibro. Thanks guys, I feel a lot better now

Hi! I'm new here, and I'm just looking for some advice.
I've had pain and weakness in my muscles, and joint pain that's gotten progressively worse the past 2 years. It's now gotten to the point where my hands cramp when I try to even brush my teeth.. and lifting my hands above my head and climbing stairs is extremely difficult. I have muscle cramps and joint pain in my legs, hands and feet, and lower back, and it makes getting out of bed at all difficult at times. I also have very frequent headaches. I'm 23 years old, I've been fairly healthy other than having factor v blood clotting disorder and high blood pressure during my pregnancies. I also have a ton of pain in the soles of my feet, which makes it hard to bear any weight at times. I have morning stiffness, and the pain seems to stay regardless of what i do. excercise doesnt help, resting only helps slightly.. the only thing that helps much is an extremely hot bath. The pain stays all of the time, but it gets worse at times, and when this happens I usually get a 'pins and needles' feeling. my joint pain gets worse with cold weather. ive also noticed some memory problems lately, I tend to forget things right after they happen. I saw a rhuemy a few times until he wrote me off like nothing was wrong.. I got diagnosed as having fibromyalgia.. which i i'm not sure i believe in. it seems like an easy and lazy diagnosis. I havent seen a dr for it in a year and a half after dealing with that jerk. Im in the process of getting referred to a new one. I had a couple of tests done with him though.
Ana was positive with a titer of 1:160, speckled pattern.
Positive RF factor
negative lupus panel
had a vitamin d deficiency at the time, but ive been taking supplements since then.
I've also tried potassium supplements, thinking it might help the muscle cramps, but it has not.

my old dr had told me that it was not Sjogren's, and that it wasnt my thyroid. he thought i might be 'developing' an auto-immune disorder, but that it wasn't showing enough symptoms to diagnose yet. it's gotten much worse since then.

also, my mother has RA, even though i was told that it doesn't increase my chances of having it, much.

Thanks in advance for any help.

I am not going to go through and read all of those other posts, but this caught my attention. When I was evaluated for autoimmune disease, the things my doctors looked for was a positive ANA, ESR, & RF. One doctors said I could not have an autoimmune disease if the ESR or RF wasn't positive, but he didn't know what he was talking about. I would not let a doctor tell me that RF factor was positive over nothing, my hindend... LOL. The symptoms you have and the ANA is high enough to definetly indicate autoimmune disease. Tell them dumb tards to put you on plaquenil, and you might actually start feeling better. My disease started at a young age like that and I was also diagnosed with fibromyalgia, pretty much because my doctor, and I quote said "I diagnosed fibromyalgia because I didn't know what else it could be". Which I understand that, but I have suffered for alot of years with pain and fatigue because of that diagnosis, still am, but plaquenil makes it better. The fatigue isn't half as bad now & my muscles don't hurt so bad, the weakness has cleared up, but I am having other types of pain that is difficult. At your age, it's normal for your Lupus panel to be normal. I didn't see a positive panel until 13 years after I first became sick. Don't let those docs tell you it's fibro. Your the only one that is going to suffer from that diagnosis. Have them to at least put you on plaquenil and see if it helps or not instead of having them play a guessing game with your health. If it helps, you'll know if it's autoimmune or not. Rhematoid arthritis is a crippling HEREDITARY disorder, I can't remember if that was your response I read, your mom has RA? Yeah, you are definetly in for it. I'm sorry but it's true. An autoimmune disease is hell to put up with. Some people are happy with their results on medications. I haven't reached that stage yet, though I am feeling better, it's just not enough.

I agree with Jenny... knock one symptom off the list, then get thee to a rheumy. DRUGS have side effects, which is why doctors hesitate to prescribe them unless they can be super certain that they are going to help you. The symptoms you describe sound like mine, and I've been diagnosed with MCTD (prob. not you because you need specific bloodwork for it to match up). The drugs I'm taking include plaquenil and methotrexate and prednisone. They're serious long term drugs. And you are still quite young, so the question is balancing out the long term side effects of drugs vs. the effects of your (still unresolved/undiagnosed) illness. Treat yourself well, be resilient, and know that you will find the answer! Good luck!

Most of the symptoms you mentioned, I had and was diagnosed with RA. Nobody in my family has had it, but stories of one of my great grand mothers having swolen knuckles and deformed hands and feet kinda makes me think that it was RA. Back then, they didn't have many ways of diagnosing these diseases, and in some cases they still have issues to this day. If your mom has RA then its a possibility you may have it too. Hydroxychloroquine is a decent start for the doctor to start you on, it's relatively cheap, and the only big side effect is stomach upset. Personally, I don't find it bothers me and have had issues with my stomach for years. Hope you find out something when you see the new rheumatologist. Stay strong! I feel your pain, you are not alone